Governor Carney caps a years-long legislative effort by signing Senate Bill 55

WILMINGTON, Del. – On Wednesday, Lieutenant Governor Bethany Hall-Long joined lawmakers and advocates as Governor John Carney signed Senate Bill 55, legislation to create a new advisory body for Delawareans living with rare diseases. Sponsored by Senator Nicole Poore and Representative Krista Griffith and championed by Lieutenant Governor Hall-Long, Senate Bill 55 would establish a Rare Disease Advisory Council (RDAC) in Delaware to help identify and address barriers to treatment and care, fostering robust dialogue around research, resources, and best practices.

Under this legislation, the council will be comprised of stakeholders from across the rare disease community including health care providers, elected officials, researchers, patients, and caregivers. There are approximately 7,000 known rare diseases, which can impact individuals in a variety of ways from lack of affordable and accessible treatment therapies to challenges with diagnosis and misdiagnosis.

“As a nurse and as a mom, I know there is nothing more impactful than making sure that when your family wakes up in the morning, their wellbeing is taken care of. This legislation has been a long time in the making, but it’s about making sure Delawareans with rare diseases and their families have the care they need,” said Lt. Governor Bethany Hall-Long, nurse and PhD, who has led on this legislation dating back to her time in the State Senate. “The over 7000 known rare diseases have a great impact on Delawareans, causing anxiety and having real implications for treatment and their futures. I’m so appreciative to Senator Poore, Representative Griffith, Governor Carney and the advocates here today for their leadership to create this collaborative policy, which will make a tremendous difference in the lives of Delawareans facing rare diseases.”

It is estimated that 25-30 million Americans suffer from a rare disease. Delaware now joins 26 other states across the nation that have established a Rare Disease Advisory Council.

More than 90% of rare disease do not have an FDA-approved treatment, according to the National Organization for Rare Disorders (NORD). Challenges with treatment options combined with unsustainable medical costs can negatively impact the care of an individual with a rare disease.

“Delaware families facing a rare disease experience incredible challenges, from obtaining a correct diagnosis to finding specialists, therapies and medication” said Senator Nicole Poore, vice chair of the Senate Health & Social Services Committee and the prime sponsor of Senate Bill 55. “Those families need a voice who can help to advocate for them, raise awareness about the unique issues they face and help our state to better meet their needs. I want to thank Lt. Governor Bethany Hall-Long and the National Organization for Rare Disorders for their tireless advocacy in the creation of the Delaware Rare Diseases Advisory Council. I also want to thank my colleagues in the Delaware General Assembly for proving once again that we will do whatever it takes to support Delaware’s most vulnerable residents.”

“Individuals with rare diseases often have to suffer for long periods of time before receiving a critical diagnosis to begin therapy and treatment for their condition. Their calendars fill up with doctors’ appointments and diagnostic tests and still can find no answer for what ails them,” added Representative Krista Griffith, lead House sponsor of the legislation. “I’m proud to stand alongside Sen. Poore and Lt. Governor Bethany Hall-Long in sponsoring SB 55 because I believe this law will close a gap that so many Delawareans face when they have a rare disease. By creating the Delaware Rare Disease Advisory Council, we are opening up opportunities for better and quicker access to diagnosis and treatment. I’m thankful for the advocates who fought for this group and look forward to the council’s efforts with other biotechnology leaders to fund and develop new treatments for rare diseases.”

“An estimated one in ten Americans is living with a rare disease, but many patients struggle to find knowledgeable health care providers with relevant expertise and access to necessary care and treatment for their complex condition. NORD is thrilled to see Delaware join the growing number of states that have established a Rare Disease Advisory Council, and we are so thankful to Senator Poore, Representative Griffith, Lt. Governor Hall-Long and Governor Carney for their efforts,” said Heidi Ross, Vice President of Policy and Regulatory Affairs at the National Organization for Rare Disorders.

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